Health Statistics Users Group Developments in data linkage May 17 2011, Wellcome Trust.

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Presentation transcript:

Health Statistics Users Group Developments in data linkage May , Wellcome Trust

Maternity data linkage in England and Wales Linkage of infant deaths to birth records 1964Linkage of infant deaths to birth records 1971OPCS/ONS Longitudinal Study began 1975 onRoutine linkage of infant deaths to birth records 1993 onRoutine linkage of death records of people born from 1993 onwards to their birth records 2005 Linkage of NHS Numbers for Babies records to birth registration record. Routine from Project to link in Maternity HES / PEDW and Wales Child Health records Further linkages?

Oxford Record Linkage Study 1962 Birth notification Birth registration Midwives’ records of home births Records of hospital births Stillbirth notification Hospital in-patient summary sheet Death registation Death notification

Recent national developments Longitudinal studies in Scotland and Northern Ireland National programmes Scottish Health Informatics Programme Secure Anonymised Information Linkage (SAIL) Databank – Wales Research Capability Programme - England

Linkage of routine data to cohort studies Linkage of ALSPAC to primary care databases Linkage of health records to Millennium Cohort study childhood obesity, asthma, infections, immunisations

Linkage with primary care databases Linkage of HES data to General Practice Research database Linkage cardiac event register to primary care records Randomisation within primary care databases and use in trials

Public Understanding Theatre of Debate – Y Touring ‘It’s good to talk’ – New Economics Foundation Active engagement and production of lay orientated information material

Programme 1.15 Welcome, background and introduction 1.30 Tjeerd van Staa, Linkage with the General Practice Research Database - brief overview 1.45 Frank Sullivan, Scottish Health Informatics Programme 2.15 Chris Dibben, Scottish Longitudinal Study, use of administrative data and Administrative Data Liaison Service 2.45 Nigel Townsend, Y Touring, Theatre of Debate 3.15 Break 3.30 Discussion - Participants' experience of linkage and ethics / research governance issues 4.00 End